Fayerberg

A life-long Manhattan Beach resident is looking to improve the balance of gender-based autism research with a study targeting fathers of affected children.

As a doctoral candidate in the School and Community Psychology program at Hofstra University, Nora Abend Fayerberg discovered a heap of information about stress and emotional effects in mothers of autistic children. But for the men in the family, there was hardly a word written or a study produced.

Fayerberg’s looking to fix that.

“So many people give up on those kids because they find it difficult to form a social/emotional connection,” Fayerberg said. “I find that the greatest rewards come from advocating for individuals who can’t advocate for themselves. Since fathers of children with autism are so underrepresented, I wanted to fill that void in the literature by giving them a voice.”

Statistics show that raising an autistic child is an ensnaring onus, sometimes shattering families. Approximately 1.5 million Americans suffer Autism Spectrum Disorder, and the divorce rate among those families hovers around 80 to 85 percent.

Research such as Fayerberg’s is the basis on which clinics and care-providers shape their services, so the dearth of literature into the effects on fathers means a shortage of means with which to cope.

Fayerberg, whose younger brother is a gifted student with dyslexia and dysgraphia, is seeking 40 fathers of children with autism for her research. Participants will receive a research packet with six questionnaires that will take about 30 minutes to complete. Fathers should have at least one child with autism under the age of 12.

Here’s the full letter to parents:

Dear Parents:

I am a doctoral candidate in the School and Community Psychology program at Hofstra University. I am writing to you because I am currently conducting research for mydissertation, which explores the effects of parental roles on fathers. An extensive review of the literature indicates that parents of children with disabilities experience higher levels of stress than parents of children without disabilities. Among the studies that have examined stress in parents of children with disabilities, the primary focus has been on the mother. Autism spectrum disorder (ASD) is a specific type of disability that causes impairments in social interaction, deficits in communication, and restricted, repetitive,and stereotyped behaviors. Parents of children with autism have been known to report more psychological distress than parents of children with other types of disabilities as well as parents of typically-developing children. Again, mothers play a dominant role in the research. The literature does not appear to include any studies dedicated exclusivelyto fathers of children with autism.

My study will compare fathers of children with autism to fathers of typically-developing children in an attempt to show the similarities and differences between the two groups. I believe that fathers of children with autism are extremely underrepresented in the literature, so my ultimate goal is to be able to give them a voice and advocate for the importance to include them in services. My research packet consists of six short questionnaires, which should take approximately 20 to 30 minutes to complete. Participation is completely voluntary, but if you are interested in helping me contribute to the literature, please email me at nabend1@pride.hofstra.edu.

Thank you for your time. I look forward to hearing from you!

Sincerely,

Nora Fayerberg, Psy.D. (ABD)
Hofstra University

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  • http://jaclyn1423.etsy.com/ Jaclyn1423

    What wonderful research. I'd pass this on to my dad, but my brother's almost 21. The hardship on him is so similar — but so different — than the one on my mom. He wants a son to watch sports with and golf and bowl with so much, it's heart-breaking.

  • http://www.flickr.com/knightmare6 Knightmare6

    While the goal of the research is worthwhile and does address a neglected part of the field's past researches, based on what I can see from this post, another part of me has to be cruel and obvious in saying, “Of course it affects both parents, so why hasn't the literature in counseling both been the same?”

    It just seems like useless research to me, it's like the five year study the U.S. government finished last year to investigate on why so many houses were being destroyed in specific regions of two midwestern states. A research project that cost $15 million dollars! And the result was because they were in freakin' tornado alley.

    My negative points aside, I hope she finds her volunteers for her paper.

  • http://www.flickr.com/photos/lisanne001 Lisanne!

    These studies are not extremely costly. And they are helpful to those practitioners who have clients dealing the emotional effect of having an autistic child. Finding commonalities is always usefuil and helps focus the therapist on issues that need to be addressed but are difficult to express in a therapeutic setting. Research subjects know they are going to be helping someone else through their sharing.

    I've done my share of these things.

  • http://www.flickr.com/knightmare6 Knightmare6

    I'm just curious as to why there was a division in the first place when they first sought out parents of autistic children, instead of singling out just the mother. I just seems it would've been more common sense to have interviewed both parents, or whoever the caretakers were, unless they did, but then focused on building a counseling program aimed at the mothers only? I guess when the studies were done matters as well, if there was some gender bias present in the earlier researches?

  • http://www.flickr.com/photos/lisanne001 Lisanne!

    Previous studies were probably done under the assumption that women, being more interactive with their children, would be more affected. Also, women traditionally were more likely to seek help from therapists and related health care providers.

  • NoraFayerberg

    Thanks, Jaclyn! I completely empathize with your father's situation. It's a common theme that I've been discovering while conducting intakes at Hofstra's autism clinic. I've been noticing definite gender differences in terms of how parents cope with having a child with autism. Mothers tend to exhibit psychological distress due to the demands of the child's diagnosis, such as taking the child to various doctor appointments, dealing with the child's education, and caring for the child in the home and community environments. Fathers tend to report that the greatest psychologist distress arises from the inability to form a bond with their child, especially if that child is male and does not have any siblings. One father told me that his biggest fear is that his child will not be able to get married, have kids, and pass on his family's name.

  • NoraFayerberg

    I appreciate the constructive criticism, but the research is anything but useless. The main reason the research tends to neglect fathers is that 80-85% divorce rate among parents of children with autism. The basic assumption is that mothers are the primary caregivers by nature and therefore gain custody of the children. As a result, the fathers typically don't have much say in the child's daily life or in the autism literature in general. Yes, it appears obvious that both parents would be affected by their child's diagnosis. However, researchers have focused solely on the mothers because they are “more available.” Which basically means that the fathers, who are already experiencing psychological distress due to their divorce, are not given an equal opportunity to seek counseling for their child's diagnosis. Perhaps if they understood the diagnosis better, or were given more emotional support, they would not be divorced in the first place.

  • NoraFayerberg

    Thanks for the support, Lisanne! You definitely seem knowledgeable in the field. I find that many of the fathers who volunteer to participate in my study are motivated by the simple fact that this is the first opportunity they've been given to share their perspective. It's important for these fathers to know that they are not alone. I'm hoping that my results will show how imperative it is to include fathers in services. Perhaps my study will lead to the creation of more social support groups, coping techniques, informational sessions, etc. that offer a safe environment for exchanging thoughts and feelings.

  • http://www.flickr.com/photos/lisanne001 Lisanne!

    This is what happens. Before any established programs are started the needs are assessed. Since women are more likely to seek help they are often the likely subjects of early studies. Somewhere along the way its decided that the statistical population represents the total one, so further studies focus on women. And unfortunately, these sort of omissions become institutionalized.

    I hope you can get this published. It's important work, especially as it underscores a serious research flaw.

    If you're not a member of Scientific Blogging you should consider joining, especially so after you have completed work on the paper. I think the subject of male omission from many studies in psychology needs to be discussed. The blogs are read by some influential people.

    http://www.science20.com/

  • NoraFayerberg

    I couldn't agree more with your interpretation. Thank you so much for your kind words. I have no doubt that my results will be significant enough to publish. I will absolutely look into joining Scientific Blogging. Thanks for the advice!